Project Isaacus® - Leading Public and Private

Actors beyond Big Data

Jaana Sinipuro, Project Director

A gift to Finland

The Finnish Parliament established

Sitra as a gift to celebrate the 50th

anniversary of Finland's independence.

The public future-oriented

organisation was tasked with

developing the successful

Finland of tomorrow.

The year was 1967.

Erkki Laitila, HS/Lehtikuva 1967

Briefly about Isaacus

The Isaacus project (2015–2018) at Sitra

- Prepares the basic principles and a business plan for the Digital Health HUB

- Runs pre-production projects as pilots for different technical platforms and develops national research services

The act concerning the secondary use of social and healthcare data in 2018

- New national Permit Authority (THL)

- New legislation (GDPR compliant) enables the founding of a new Digital Health HUB that can combine data from different registries. This provides more opportunities for research and innovation.

The new Digital Health HUB in action in 2018

- A one-stop shop, which offers permits and access to data for research, big pharma and for wide use in the public and private sector

The Digital Health HUB

Digital Health HUB

Data

gathering

Pre-

processing

the data

Data

distribution

STEERING AND CONTROL

PERMITS TO USE DATA AND ETHICAL EVALUATION

Recognising the information need and ensuring availability

DATA SOURCE DATA NEED

Social and healthcare registers

Other data concerning individuals

USE OF THE DATA

Academic research

Development and innovation

Other uses

Why right now?

The public has a positive attitude towards the

secondary use of healthcare data.

The Act on the Safe Use of Health and Social data.

ATTITUDE LEGISLATION COMMITMENT

Strong co-operation between ministries,

public administration and the private sector.

Percentage of respondents who considered it to be important or very important[Source: Survey made by TNS Gallup / Sitra 2016, link to Research outcomes]

Basic principles on the use of data

Percentages of those considered to be trustworthy or quite trustworthy[Source: Survey made by TNS Gallup / Sitra 2016, link to Research outcomes]

Trust in those who use my data

Enhancing researcher services and offering better access to national registries

Fastest route to data – pre-production projects

Creating new big data innovation platforms and offering new pools of data

Evaluation of new technology and methods

Government proposal for an Act on Secondary Use of

Health and Social Data and related legislation

Purpose of the proposal• to create consistent up-to-date conditions for secure use of client data compiled from service

activities within healthcare and social welfare and other personal data related to health and wellbeing

Scope of application• statistics, research, development and innovation activities, education, knowledge management,

official instructions and enforcement, authorities’ planning and reporting duties

Objective• to facilitate and speed up the process related to licences to use data and to essentially reduce the

administrative burden created by parallel licensing procedures.

• to better protect clients’ confidence and personal privacy Technological development has created new conditions for secure handling and combining of sensitive client data and for combining it with other personal data in a secure manner.

Means• statutory right to use client data from health and social services for certain purposes

• one single licensing authority to decide on the use of data related to the health and social sector

• secure electronic environment and secure connections for controlled handling of released data

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How to get a licence and the data?

Request for licence or data

via an electronic system

Release of data

• anonymous data

can be released as such

• pseudonyms / identifiable data

into a secure environment

Licensing authority• grants the licence to use the material, or accepts the

request for information and gives an order to the service

operator

• notifies the decision to the person needing information

Data controllers• advice service, data resource descriptions and release of data

for handling an application for licence or a data request,

releases the licensed data to the service operator

Service operator• collects, combines, pseudonymises, anonymises the data

and releases it to be used in a secure electronic

environment maintained by the service operator or the

recipient

Person/operator

needing

information

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Impacts of the new Act

26 October 201716

Centralised licensing and

secure electronic environment

Enables individual use and

combining of data

Improved opportunities for

research and product

development

Faster access to information, wider range of

purposes of data use

Effective treatments and new medicines, e.g. for risk

groups

New business activities, products and services

Up-to-date data

Better availability of combined data

Remote use

No need to transfer sensitive data

Data will be used in a secure and scalable environment

Access to health and social data via one-stop shop: guides the user of data, administrates licences, maintains metadata, ensures information security and gives user support

On request

Faster than ever

One single licensing authority

Consistent practices

DIGITAL SERVICE

PORTAL

Operation starts in stages at the beginning of 2018

Our vision

”Country as a Cohort” - analysed data fast returned to operationsModern GDPR compliant legislation

Relies on Trust…